“Low T” tease: rosy anecdotes and the reality of testosterone treatment effects

Carolina Branson, PhD, is an associate editor with HealthNewsReview.org. Her graduate work at the University of Minnesota focused on media studies and health. 


Can testosterone really help older guys get their groove back?

Can testosterone really help older guys get their groove back?

The sale of testosterone is a booming business. Some men take supplements of the hormone hoping to increase libido, energy, muscle mass, and more. But until now, there was little evidence that using testosterone would provide any of these hoped-for benefits. Enter a new study published in the New England Journal of Medicine that reports modest positive effects for men over 65 with documented low testosterone who spread a testosterone gel on their abdomens. The study was the first of its kind to establish that using a testosterone gel could deliver an effect more powerful than a placebo.

NEJM testosterone slideBut the improvements experienced by these older men were hardly anything to write home about (see figure, left). The primary outcome was assessed via a questionnaire that measured participants’ sexual activity on a scale of 0 to 12. After a short-term boost of about a half a point, the difference between the testosterone group and placebo dipped to 0.3 points after a year — barely noticeable. And it’s likely that some of the 230 men receiving testosterone therapy were no better off than if they’d been using skin cream.

And yet the personal patient stories featured in news coverage painted a rosy portrait of the benefit. Consider this story from NPR that recounted an anecdote from Dave Bostick, a patient who…

…it turned out, was in the group assigned testosterone. He did develop a more robust libido, he says. But even more important, he adds, he felt happier. He had more energy, and his enthusiasm for trying new things — new classes, new interests — was restored. His part of the study ended two years ago, but Bostick is still taking testosterone.

The New York Times, interestingly, also turned to Bostick for insight into how testosterone treatment made him feel:

For David Bostick, a 71-year-old Pittsburgh man who participated in the study, the appeal of testosterone was that it might help with his sluggish feeling and reduced libido. After a few weeks of smearing a gel—he did not know if it was Androgel or a placebo—on his stomach, he began to feel different, with more sexual desire and more energy. He guessed he must be receiving testosterone.

NBC, meanwhile, turned to an orthopedic surgeon — Dr. William Reilly — who “helps run a chain of testosterone treatment facilities called the Low T Centers” for a first-hand account of the effects. With that background, is it any wonder that Reilly is enthused about the impact testosterone treatment had on him? Reilly tells NBC that he “hit a brick wall” when he was 62 and found that “all of a sudden my energy level just wasn’t the same.”

He started getting less out of his gym workouts. “My arms were starting to get smaller. My belly was getting bigger,” Reilly said.Reilly said testosterone replacement therapy helped him feel better.

Ed Stevens of Ft. Lauderdale is also quoted by NBC as saying, “I wouldn’t call it a huge difference. I just saw over the months my body mass came back to where it was, my energy was better, libido was a little better.”

Compared with some story anecdotes we’ve seen that can wildly mischaracterize benefits, these examples are not egregious. The stories we looked at all provide a fair accounting of the study findings and pay appropriate attention to potential harms. But the focus on single patient anecdotes — universally touting positive results — is troubling. As we note in the description of our review criteria:

Patient vignettes make engaging reading but they are not data. When a story is top heavy with personal stories, it makes it hard for readers to sustain their critical thinking when (if) they get to information that is quantitative. If you hear glowing patient anecdotes about how well something worked, always ask yourself if that was a representative example.

If we’re going to play up anecdotes, why not feature the guy who achieved better results using Viagra?

Why not profile the guy who couldn’t tell if he was using testosterone therapy or skin cream?

Why not look at the guy whose PSA levels went up on testosterone and who was worried about his prostate cancer risk?

There may be a reason that the study itself, and thus the subsequent coverage, tended to focus more heavily on the positive outcomes: a pharmaceutical company partially funded the study. According to Australian journalist Ray Moynihan, who evaluated both the NBC and the New York Times stories, these outlets did not adequately address these conflicts of interest in the study. Moynihan has been a vocal critic of attempts to medicalize sexual problems by the pharmaceutical industry, and he thinks these stories could have done more to notify readers of the researchers’ links to drug companies.

In my view the NBC web-story came across as more promotional than journalistic, it doesn’t seem to have any independent critical comment in it, and the story makes no mention of a crucial fact – the study was co-funded by the gel maker.

The Times story does contain some critical questioning voices and covers the issue of potential side effects, and while it does mention the drug-maker co-funded the study, its fails to cover the fact that  6 of the study researchers had direct ties to the drug maker, and a total of 16 researchers disclosed ties to pharmaceutical or supplement makers – including being paid directly as advisors or consultants.

We know from much evidence that sponsored studies tend to find results more favourable to the sponsors products – and having so many authors with such close ties to so many drug -makers raises questions about the reliability of these findings and their interpretation. In my view, those questions were not given enough airplay in either of these stories.

One of the things the Times coverage does well is emphasize the lack of long-term data about potential heart and cancer risks associated with testosterone therapy. Concerned about the huge and expanding market for testosterone treatments, Dr. Doug Campos-Outcault — one of our regular story and news release reviewers — hopes this message is one that will resonate with Times readers.

“This is a very classic example of the ready, shoot, aim approach to medicine we take in the USA,” Campos-Outcalt said, “implementing widespread use of a therapy that has not been adequately tested for benefits and harms.”

Comments (3)

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Alan Cassels

March 1, 2016 at 5:43 pm

Usually when you take a drug with side effects, those issues only affect the person who swallows the pill. One of the weirdest things about testosterone gel is the possibility of virilization of the people you touch. If you rub testosterone gel on your chest or arms and then decide to hug your lover, pets or your children when you’re not wearing a shirt, they could develop masculine traits.
This is not anecdotal. The US FDA has issued a Black Box warning –the sternest drug safety warning going – that says two types of testosterone gel caused these things in children: “inappropriate enlargement of the genitalia, premature development of pubic hair, advanced bone age, increased libido and aggressive behaviour.” http://www.fda.gov/Safety/MedWatch/SafetyInformation/ucm186466.htm
A drug so potentially powerful that you have to be careful about who you touch with your chest or your gel-slathered hands? Hmm. Hardly paints a rosy picture of its effects, regardless of how happily some men are crowing about it.

Johanna Ryan

March 2, 2016 at 12:05 pm

One of those “alternative anecdotes” can be found here, in John Fauber’s excellent article about the overselling of testosterone. He tells the story of Jeff Goehring, a 54-year-old Milwaukee-area man who was given AndroGel for “fatigue” — and collapsed of a stroke four days later.

http://www.jsonline.com/watchdog/watchdogreports/testosterone-courses-downplay-risks-lead-to-overuse-in-older-men-b99595151z1-333591801.html

Goehring is one of several thousand people suing the makers of testosterone products, so you can be sure there are other stories out there. Thanks for calling out promotional BS disguised as “news”!

Zal Press

March 5, 2016 at 10:14 pm

I’m reminded of the maxim “stories trump data” when it comes to the use of patient stories and subsequent exploitation of the patient experience to serve a particular agenda. While patients are very willing to share their experience and authentically feel that sharing it in ANY way is helpful, that’s not always the case. Stories are powerful and patient narratives can make a significant contribution to improving outcomes. We’re seeing narratives emerging as a field of study in professional education at all levels. Narratives are informing changes in care delivery. And stories are enriching our understanding of the lived illness experience in a wide range of media. With all of this momentum, it’s probably a good time to begin crafting some standards around the use (and exploitation) of patient stories. Testimonials in the form of personal stories whether for charitable fund raising and especially paid testimonials for pharmaceutical marketing are practices that need to be examined and scrutinized. Yes, stories do trump data. When the PSA test was declared unreliable after years of data collection and analysis, it took only one personal story of a life saved because of a PSA test to trash years of work and cause a stampede of men to their doctors demanding a PSA.